Monday, 26 April 2010

Marathon Update

Well, we made it. All of Ellen's Team finished the London Marathon in times varying between 3 hrs 12 mins and 6 hrs 27 mins. It was an amazing and emotional event and we cannot express our gratitude enough to those who ran, those who have sponsored us and everyone who has supported this amazing cause. Ellen was there to greet the runners as they arrived at the after party and was on great form, other than a slight moment of distress when she found out that Daddy had not actually won the race - he has promised to do better next time! We are on track to raise over £60,000 for Sparks which will all be channelled into neuroblastoma research.

The photo above is of some of the team (at the beginning, not the end!).

Saturday, 24 April 2010

London Marathon

Tomorrow is Marathon Day. Ellen is very excited about going to London to see Daddy running in' 'the race'. She is very keen to shout 'go Daddy go' and is pretty convinced he is going to win!!! The picture above shows the two of them running along the beach at Southwold 'training' together.

The Marathon is certainly going to be a big day for us all and I am sure it will provoke a whole mixture of emotions. We are all very proud of Simon who despite the various challenges of the past few months (a sick daughter, a four weekly visit to PICU, a heavily pregnant (and somewhat grumpy) wife, a full time job and a genuine dislike of running long distances) has tirelessly trained week in week out. We are also so touched by our family and friends who are doing the marathon for Ellen. They have all dedicated a great deal of their precious time and energy to train and fundraise (and travel, Rowly from Hong Kong, Reeso from Singapore) for which we are truly grateful. We are also completely overwhelmed by the number of people who have so generously sponsored the runners - the current total is £51, 699.08. I know that Simon will not only be thinking of Ellen and Holly as he runs through London but also for all the other children we have met through Ellen's illness who battle cancer on a daily basis. We so hope that the money we have raised will make a difference.

Wednesday, 21 April 2010

Last dose done

It has been a week since we got home from hospital with George and things are going pretty smoothly. Ellen had her last dose of Retinoic Acid on Sunday night which means that for the first time in months she has not had any medication for three whole days! Ellen continues to have an over night feed through her NG tube but we hope that if her appetite continues to improve this may be stopped in the next few weeks/months. Every day Ellen is getting stronger and she is really starting to enjoy life again. She does still tire pretty easily but this is improving each day. So, at the moment we are taking small steps forward and enjoying every moment!

Thursday, 15 April 2010

New arrival

Ellen's little brother George was born on Sunday 11th April at 11:50 weighing 6lb 11oz (3035g). Despite a visit to NICU due to a few 'breathing problems' (our life is never straight forward) we are back home and are all doing very well. Ellen is being a very dutiful big sister and certainly enjoying having George around. Only seven doses of her retinoic acid to go!

Saturday, 3 April 2010

Brave girl

We are home! This week has been quite tough as Ellen did not respond well to her last two days of anti-GD2. She became quite unwell with a very high pulse rate and low oxygen saturations. We are not too sure why this happened, but are very relieved that it was her last dose. We now have no more planned hospital stays, just two more weeks of retinoic acid at home. Although we are really pleased that we have made it to the end of the treatment protocol we are all feeling a great mixture of emotions. It is very daunting thinking of what Ellen's future holds and we can only hope beyond hope that she gets the chance at life that she so deserves. She has been such a brave, brave girl over the past fourteen months and we are so very proud of her.